stopping steroids

[Reddev]

I have been on 1mg prednisolone for three months now. Advice would be nice from you the people who have helped me through these last six years. I am quite happy to continue to take the 1 mg but what are the chances of me stopping the pred and having to go back up to a higher dose? Thank you for any advice.

[DorsetLady PMRGCAuk volunteer]

Well you won’t know until you try.

I’d go to 0.5mg initially, and provided that’s okay, then to zero and using one of the slow tapers we always talk about.

But you need to remember that at such low doses, 0.5mg really can make a big difference.

[PMRpro Ambassador]

Only one way to find out! I'd very slowly go to 1/2mg and then to zero with them being the new dose in a very slow slowed taper. And then see what happens. As long as you aren't in denial if you start to feel symptoms again it shouldn't turn into a problem. Catch it quickly and you should be no worse off than you are at present.

[Reddev in reply to PMRpro]

I will drop to 0.5 and take it very slowly. Have been here once before . I will not rush this stage and I’m not in such a hurry as I was before to get off my little white friend as I was first time round Thank you all for helping me get too this stage.

[123-go]

Hello, Reddev. I reduced very slowly from 1mg to 0.5 to zero using PMRpro’s plan to be found in FAQs:

healthunlocked.com/pmrgcauk....

I used my discretion during December when things got busy in the run up to Christmas and took an extra 0.5mg sometimes. I have been off pred completely since the beginning of February.

Once I reached 0.5mg and 0 was in plain sight, it suddenly dawned on me that after six years I wouldn’t be taking my little white pill at breakfast time. The feeling was strange: leaving something out of my routine that had become such an important part of my day was like letting go of a friend 😏! Over-dramatic or what?

[Reddev in reply to 123-go]

Beginning to feel that you too. I’m taking my one mg a bit later everyday and not taking at at the exact time every day like I used too.

[123-go in reply to Reddev]

If that works for you all well and good. Personally, I stuck to previous routine time wise.🙂

[Judyliz in reply to 123-go]

I completely understand your comment about it feeling strange not to take a little white tablet. I took my last one in January 2023 after nearly 7 years. I am fortunate in that I don't require any other medication but choose to take one vitamin D tablet with my evening meal and a magnesium tablet before bed. I still marvel at the fact that when I wake in the morning I can move normally. I will however, never take my pain free movement for granted.I still need the comfort blanket of our group. Each morning when I wake, I make myself two mugs of tea and go back to bed to read the previous days posts.

My intention was to write up my GCA/PMR journey in the hope it might help others but, I am not there yet. The intellectual part of me knows that I am in remission but the emotional part of me ....

( I have a wee stash of prednisolone that I can not get rid of )!

I hope you have also taken your last little white pill.

[123-go in reply to Judyliz]

My stash is my crutch at the moment built when my previous GP didn’t appear to have noted correspondence from my consultant stating ‘new dose’ as I reduced. I gave up ringing the prescriptions clerk to save my sanity.

When the time is right you’ll write your story. All good wishes to you.

[Lonsdalelass in reply to Judyliz]

Ditto! Me too....one last box I can't let go.

[PMRpro Ambassador in reply to Lonsdalelass]

Keep an eye on the use-by date!!!!!

[123-go in reply to PMRpro]

Good point! I have ‘filed’my stash in date order and written the exp date on boxes in black felt pen: belt and braces 😂.

[Lonsdalelass in reply to PMRpro]

Already checked that 👍🏻 got until 2026!! Had to do a double take as I couldn't believe there was that long left on it 😀

[HeronNS in reply to PMRpro]

When filling most recent prescription, Aug '23, I made sure to ask expiry date as we don't get original packaging. Sept '25!😊

[Lonsdalelass in reply to 123-go]

Ha ha, I'm a bit like that still now and it's been nearly 2 years without them! 😅

[Timelost in reply to 123-go]

Hope you don’t mind me stepping in here as I have only just joined am am still reading current posts. I took Prednisolone for 18 months for polymyalgia and gradually came off but all my pains came back in my legs. I am now back on it but down to 5mg which seems to be ok so I will stay on it at that amount. How did you take it? Did you take omeprazole as well? I now have osteoporosis so am reluctant to take it as well as Pred?

[123-go in reply to Timelost]

Hello Timelost. Any and every member is welcome to comment and or ask questions here and I’m pleased you found us. It’s clear that your prednisolone was tapered too fast first time round which caused symptoms to flare and necessitated a return to steroids. Please do fill in your bio to date to enable our extremely knowledgable ‘experts’ to advise and make suggestions that are pertinent to you as an individual. This link will be useful for you:

healthunlocked.com/pmrgcauk...

I have never taken Omeprazole (why take something for a condition never suffered?) and the only bone protection I take is Calcium+vit D which is prescribed by my GP and should be prescribed for you as a matter of course. Other than that I try to get calcium through diet.

Please do have a look at the FAQ section. There’s a lot to take in and you will no doubt, like many of us, need to return to sections from time to time. The information is highly valuable and valued.

To give you some idea of what to put in your bio you can ‘click’ on anyone’s avatar and will be taken to their profile page. Best wishes.

[Orange_2022 in reply to Timelost]

If you're taking Pred with food and not having any stomach issues I wouldn't start omeprazole. When I read the side effects, particularly for bones, I stopped taking it after a month with no ill effects. It's a 'tick box' drug for GPs prescribing steroids (although I'm sure some people need it).

[HeronNS in reply to Timelost]

Do have a look at my story as it, although an old post now, does contain some ideas on ways to help care for one's skeleton.

healthunlocked.com/pmrgcauk...

[TheMoaningViolet in reply to 123-go]

Not al all; it is a normal reaction. Well done!

[HeronNS]

My account, which I give here as it seems like it might be similar to what you might expect: I recently ended pred for the second time! The first time I achieved pred zero was in 2020 and I was back on pred within 6 weeks and a few months later had to admit to having a major flare. Therefore, like you, was very trepidatious when approaching zero for the second time starting last year. The first time I used half a mg as my "new dose". I also did each step of the taper two times over. But apparently I was still not in remission, although I'd been on pred nearly six years by then. This time I did the same slow introduction, but instead of moving along according to schedule I paid attention to my body and if there was the merest hint of PMR symptom, or pred withdrawal, I just did the step over again. It took months and gradually increasing the length of time between each half mg dose, but finally I was on a week of seven days without pred. Took a half mg, fully intending to do that step again, and maybe again. But I forgot to take the half pill! So, feeling no untoward effects, I decided not to take any pred unless I actually felt a genuine PMR symptom. That last dose (just over six weeks ago), was taken without my even knowing it would be the last dose. Have had ups and downs with pains but they have not to this time ever developed into anything more than what could be expected in an arthritic old age, and they go away again as quickly as they come, unlike last time where there was a gradual build-up of pain until I could no longer deny what was happening.

All of that was a long way of saying go as slowly as you need to, and listen to your body. Good Luck! 🍀

[Reddev in reply to HeronNS]

After my experience first time round I do intend to go slowly this time. If I have to stay on 1 or 0.5 mg I will not stress like I did first time. Thank you for your help.

[Sofarbrnun in reply to Reddev]

What I did when I was down to 1mg for a few months, I began to take a half one day, then a whole one. Did that for a few weeks or so, then cut the half to a quarter and did that with a half. So that went on every other day til I did only a quarter then zero and I finally was off them after 6 years. Good luck to you. You got this far. You've only a little ways to go.

[Reddev in reply to Sofarbrnun]

Yes I think that is the way to do it ,slow and easy. Thank you.

[yogabonnie in reply to HeronNS]

Heron NS never leave here!! I pay particular attention to your posts. so glad you are down and finished.. hope it lasts!! Maybe I will follow suit one of these days. at 1.5 but definitely not feeling spry. But aches and pains are no surprise at 77. So... I never know which is PMR and which is old. will have bone check again. Bones are still my biggest worry and I need to PUT ON THAT WEIGHT VEST! 🙂

[agingfeminist]

I am in the same position as you..very very slowly dropping to 0.5mg. watching ofr any symptoms and feeling surprisingly nervous about maybe reducing to sero. But the truth is I can always take more if needed. I'm still having probelms with adrenals but gather they can take a year after zero pred to return to normal (whatever that will look like now I am so much older)

[Gardenbay]

for the last month or so I decided to have one mg one day then half the next day alternating for about a month, I have now dropped to half a ml one day, then a free day, at present I’m still on that dosage.if I have felt rough I just take the medication every day. Best wishes.

[456again]

I’ve reduced from 15mgs to1mg from April 2022 to now, have been on 1mg for about 6 weeks now. So I’m in similar boat to many of you. I will stay with 1mg for a while. I think my aches and pains are my arthritus now. But as others have said bit wary of coming completely off. Later in spring/summer I will try the 0.5mg for a while, fingers crossed.

[Exflex]

I reduced by 0.25mg per month from 1mg downwards, sometimes repeating the step more than once.